So for me RT was...

1) consultation with Dr in Utah...

2) consultation with Dr in Idaho Falls

3) Friday before my 1st treatment, met w Dr to do a "mapping". Where he measured around my hand so many cm's (I think 5cm) from the nodules and cords. They used that then and put a clear plastic sheet over my hand, to draw a perimeter on it. They sent the drawing out somewhere, where a mold was made that would fit into the machine that emits the radiation. The mold is meant to help focus the radiation on a particular area.

4) Treatment week 1 - for everyday, for a few minutes, I would visit the office, where they would use the machine to push the radiation. The actual time of radiation was somewhere round 45 seconds, I think. The actual time from the time I was called back to when I was walking out the door each day was about 5 minutes. At most, I waited for 5 minutes to get in each day. Sometimes, the moment I walked in, they took me back. The Dr oversaw the the 1st day, and the last day. Most other days, the radiation techs administered everything.

5) Treatment week 2 - I think it was around 8-10 weeks after the 1st treatment. It was a repeat of the 1st treatment.

As for "the majority do not contract". Personally, I didn't want to risk it. As once it does contract, RT is not an option. I am now 48, and getting this at such an early age from what most get it, I think. So, I was perhaps over paranoid that it would still be growing and therefore contract. My uncle who is alive who has it, is now about 85, and his is NOT contracting. Just nodules like mine. However, my other uncle who passed about 20+ years ago, he had to have hand surgery. His were fully contracting. He was roughly 55-60 or so when he had that surgery (guessing).

I didn't have to force the RT dr's. They both consulted with me for a long time. Said its 100% my choice. They educated me on the risks, etc. (seemed very very low) Dr Bair said he knows of no confirmed cases where a person has contracted cancer in the hand due to RT. And they now have (I think) 20 years of data for DC/DD with RT. He said that is not to say, it could not happen.

My Dr also said, for some (a small few), the nodules and cords can actually get smaller or go away, but he warned me not to hope for that. Its now been around 4 months since my 2nd round of RT. My nodules haven't grown at all since, and its hard to really say, but they might even be slightly smaller. Perhaps not though. I am not expecting for them to go away or get smaller. Although, it is possible, he said.

The biggest side-effect I am experiencing is some dryness in the hand. I normally have very moist hands and I never used to use lotion, except occasionally during the winter. Its winter now, and I am using lotion about daily. Around August when I had my last round of RT, I didn't have to use lotion until like November'ish.

Now, for a hand surgeon, they very likely will discourage you. This seems to be consistent with the DART FB site, and research I have done. I have a neighbor who is a hand surgeon. I saw him at church one week, and I spoke w him about it. He was the first one to confirm it was Dupuytrens.. His recommendation was to do nothing until it contracted. I didn't do that.

I would encourage you to visit the Dr Skidmore at Gamma West or Dr Hansen at Gamma West. You can see what offices they work in on their website. I would trust trust them. You don't have to go to Idaho. I am not sure what part of Utah you are in, but they have offices in St George, and along the Wasatch front. If you are near St George, I understand there are more options in Vegas then what we have in Utah.

Best wishes


-KP (Kyle)

Edited 12/27/17 03:37

Hi Shoney,

you already got a few very good answers, so just one more comment from me: many are bad mouthing RT. I myself had it several times in different areas of my both hands, and the worst effect was that the irradiated skin got a little more dry. This was no serious problem and it seems to have vanished after several years (or I got used to it). In my case most of the nodules went away and most cords are staying stable. Only in one of 8 instances the nodule and cord kept growing and eventually bent that finger. I later had Xiaflex and NA to correct it. Both worked reasonably well but, of course, I prefer where the nodules just vanished.

Wolfgang

Shoney:

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... I think I got in trouble by saying I read a horror story about RT on another site. ... The horror story I read was his hand was numb and stayed numb. I know there is a chance you can get cancer. ... I know if I do there is Xiaflex and NA. Did the RT make your cords and nodules go away?

Thank you for all your help.

Shoney

Hi Shoney,

I am convinced that if there is 1 good advice for Dupuytren's then it is "don't let it spoil your life". Keep enjoying what you do and life in general. Dupuytren's is inconvenient at the most, not more.

Wolfgang

Shoney:

---

Thank you Wolfgang. I have an abstract study of RT and it is overwhelming. Hubby is a rocket scientist and he said he can decipher it. Like I told Kyle, it is a decision we have to look into. If I can be guaranteed that I won't contract, I would live with the one nodule and cords. I don't know if this is normal, but in the morning my hands don't feel tight and have this weird sensation. It is at the end of the day. I have a couple of friends who have been diagnosed with DD but not sure if they have my same sensations and their doctors just say wait and see. I know with RT is not a wait and see thing. You have to be proactive. As I was told on the Facebook site, sensations waxes and wains. I am still trying to accept I have this. I am in denial until I look at my palms. I like to work out and then I read posts where they said don't work out. I am not a body builder but do light weight. We retired to Utah and bought lots of water toys and was looking forward to doing them and I question will I be able to kayak and Sea Doo and those things. At this point I seem to be letting this disease rule my life. Hubby says to let it go for a few days and he would help me do research.

Thank you again.

Shoney

Hi there. I did not get this from you but the Facebook forum. They just said you have to do RT at a certain stage in your disease. My problem is I don't know what stage. Some people don't feel anything with their nodules or cords but I do feel a tightness in my hands especially when not moisturised. I know an experienced RT specialist for Dupuytren's will be hard to find locally and many people travel to different states. I have read many people have had to repeat RT. My feelings right now is to wait and see. As you can probably tell, I am a little stressed out but getting better. I feel I am a healthy and active person and then to come down with this. I guess it strikes anyone.

But I really appreciate everyone's help on this forum and I am sorry I am a pain in the butt. I have a radiologist friend in California and my husband is going to pick his brain. He is not a radiology oncologist but maybe he knows someone.

Thank you so much again! I try to post pictures of my palms but it does not seem to appear. I will try again.

Shoney